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Strategies and plans for rare diseases are currently being developed by the European Union and many of its Member States. EURORDIS, the voice of all rare disease patients in Europe, believes that patient input into this process is of the utmost importance. EURORDIS' newest project, Polka1, launched in September 2008, has been set up to respond to this objective.

The project will facilitate the consultation of the European rare disease community at large, with the aim of building consensus on preferred public health policy scenarios for rare diseases.

“To this date, no other European initiative is geared towards collecting patient opinion on rare disease policies,” says François Houÿez, Health Policy Officer at EURORDIS. “Polka's ground-breaking approach will minimise the dominant influence of opinion leaders. Its process for deliberative patient debates will not only empower rare disease patients, but also prepare them for more classic workshops or meetings where time is often too limited to grasp complex issues and immediately provide an informed opinion. In Polka, every participant will be given the opportunity to ask questions, make comments, and vote.”

So how does it work?

Patient debates on five to seven carefully chosen, rare disease public health policy themes will be launched using a variety of methods such as the Play Decide game or Delphi2-like methods. Each debate will introduce a policy scenario and will ask patients to vote. “DECIDE's goal was to introduce simple and accessible deliberation tools to the public of science centres and museums,” explains Andrea Bandelli, its Project Director. “In DECIDE, debates are organised and structured using a 'kit' that facilitates inclusion of all points of view, and at the same time provides the necessary scientific background to engage in informed discussions. The game was developed in 2004 and launched in 2006 by a consortium of four science centres and museums3, with the support of Ecsite, the European Network of Science Centres and Museums, and nef, the New Economics Foundation. The project is based on the powerful notion of trusting the public, reversing the top-down approach that is common to so many information and awareness campaigns. It has now been used in five continents and translated into 20 languages.” The strength of DECIDE resides in engaging people in the deliberative process. “Because of its playful format,” adds Andrea Bandelli, “it can be used to introduce difficult topics to audiences who would otherwise never come in contact with the issues.”

Rare disease material will be developed by experts and patient representatives for use in Polka: information packs, fact sheets, and possible policy scenarios. Moderators in various Member States will organise debates with up to eight patient representatives per debate. In total, the project should facilitate between 600 and 1000 discussions across 27 countries, in 21 languages, with a minimum of 80 participants per country! Similar sessions may be organised by Ecsite in museums and science centres to collect the point of view of the general population and draw useful comparisons. “Working with EURORDIS will allow Ecsite to benefit from the scientific resources from the Polka Consortium in order to develop another scientifically-sound Decide game, later available to all for public use,” says Catherine Franche, Executive Director of Ecsite.

The rare disease topics and policy scenarios selected for the debates will be presented for comment in events such as annual membership meetings and general assemblies of EURORDIS and other partners in this project, and meetings of National Alliances. If no consensus is reached on a specific policy scenario, several scenarios will be presented in the debate. The game will be launched at the 5th European Conference on Rare Diseases (ECRD 2010) in Poland, the first of its kind in an Eastern European Country. Debates will then take place over the following year.

The Polka Project will also support the implementation of the EU Policy for Reference Networks; a Task Force will continue the RAPSODY Project activities and propose additional recommendations to further support the Policy. “Polka is an exciting project, specially developed for rare disease patients and their representatives,” says François Houÿez. “I encourage everyone to visit the DECIDE website and see for themselves how fun and enlightening the game is. Through Polka, EURORDIS will once again ensure that rare disease patients are heard and that their opinions are taken into account in European and national rare disease public health policy development.”

Polka is a EURORDIS project over three years (September 2008-September 2011) supported by the European Commission and a Donors Committee composed of three pharmaceutical companies CSL Behring, Novartis and Sigma Tau Pharmaceuticals

Read more:
Play Decide- The Game (including kits of information to download in many languages)
Download POLKA brochure